In The End…

Frank discussions about death make most people uncomfortable.

Whether you believe in an afterlife or not, once you’re dead, you have no say in what happens. But before you shuffle off that mortal coil, choices must be weighed and measured that some find impossible to make. Those choices are then made for us and we are left to live (or not live) with the consequences.

A few days ago, I came across a Wall Street Journal article , The Ultimate End-of-Life Plan, and I urge you to read it, regardless of how squeamish it may make you. (It’s not graphic, but it will dredge up some emotions that could be buried deeply within you.) The author shares her mother’s decisions to die after making a series of choices that eschewed the traditional “do everything possible to prolong my life” avenue that many seem to make these days. Advances in medicine and diagnostic tools are pitted against the risks of using these advances and tools, with many left behind wishing for an alternative outcome.

Here are some highlights of the statistics within the article:

“A 2012 survey by Lake Research Partners and the Coalition for Compassionate Care of California found that 70% of state residents want to die at home, and national polls have registered even higher proportions. But in fact, nationally, less than a quarter of us do. Two-fifths die in hospitals, and a tragic one-fifth in intensive care, where deaths are often harrowing.”

“About a quarter of Medicare’s $550 billion annual budget pays for medical treatment in the last year of life. Almost a third of Medicare patients have surgery in their last year of life, and nearly one in five in their last month of life. In their last year of life, one-third to one-half of Medicare patients spend time in an intensive care unit, where 10 days of futile flailing can cost as much as $323,000.”

If it was just about the money, it would be one thing. If it was just about where we die, it would be another thing. But about dignity. And that’s something entirely different. It’s eloquently addressed in this article.

The mother in the article was blessed (and yes, you read that right) with her faculties up until the end. She was fortunate to make choices and her family supported them, even challenging her medical team when a possible break in the plan was going to be made. When decisions about healthcare intervention and end-of-life are made, those who love the person and could potentially be put in a situation to make decisions for them, must understand what is wanted – and agree to see them out, even if it’s not what they (the medical staff or decision makers) think is best.

I’ve seen this in play to a degree. My dad’s parents lived into their 90s and were intelligently lucid and capable of choice. My grandmother was kicked out of hospice twice. (Yes. Twice.) They both had family near in their final hours and passed peacefully – and on their own terms. May we all be so fortunate.

But it doesn’t always happen that way. When intervention after intervention creates a cascading failure, rendering the person alive but unable to live, it’s a Damoclesian quandary. Damned if you do, damned if you don’t.

I don’t want that.

See, I’ve been lucky. I’m not dead yet and I have my full faculties. (Some would argue that point.) My husband knows that I have no desire to spend my end of days hooked up to a ventilator, in a never-to-return state. He knows how I feel about healthcare decisions. (We are in the process of creating living wills after moving to another state. Did you know that each state has different requirements?) There comes a point that you just say “enough”. This woman’s account of her mother’s bravery has inspired me to voice my “enough” points. I want to die with dignity – a long time from now, I hope, but with dignity.

What does this have to do with diabetes? Everything. We live with the possibility of death every day. Yes, I am well aware that everyone does, but we get to stand a little closer to the edge of the precipice. A bad dosing decision? Complication rearing an ugly head? The eventual “pining for the fjords” happens to all of us, but reading all of the statistics (and having people tell you in your youth that your life expectancy is shortened by… oh, a third…) puts death and dying a little further ahead in our thoughts. (My friend, Lee Ann Thill, also shares her thoughts beautifully – in words and art – here.)

If you have diabetes, how are you planning on dying?

Strange question, right? But it should be asked. It should be asked by everyone, but it should be asked now, when you can answer it without someone else answering it for you. Let other people know. Write it down. Get a living will. Give medical power of attorney to someone who will do as you ask, even when it’s tough. Die on your own terms. And hopefully, a long time from now. Because we all die in the end.

“Why don’t we die the way we say we want to die? In part because we say we want good deaths but act as if we won’t die at all.”

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This is most definitely a hard subject to think about. Mortality is just that, and living will be, at some point, fatal for us all. The more choices you have surrounding something you truly do not have a choice about (dying) makes it feel the slightest bit more comforting. My uncle died last week, after a ruthless battle with cancer, but he had already planned his funeral and service and it was beautiful. It was his, and it made letting him go just the slightest bit easier, knowing he made those choices and was content. Make those choices before they could be taken away from you. Which is a good reminder that my husband and I still need to create our wills, and provide for our daughter should something happen to us. It’s terrible to feel like we’re planning for the “worst case scenario”, but even worse to think of what would happen if we didn’t make those preparations.

This is always a hard subject. My husband and I both have our living wills and our daughter is aware of what our wishes are. However, one thing that I have come across that I found very detailed and helpful was a document called “Five Wishes”. My grandmother had one. Some states do not recognize it as a legal document but more as a suggestion.

Thank you for this very thoughtful post. It is so true that in addition to living well we need to learn the value of dying well. Diabetes intensifies my fear of the day that I can no longer care for myself.

Planning? Well, I have a living will (created in a state in which I no longer live) and a life insurance policy that may be inadequate, but what I can afford.

But now, as I think about it, I want to go in a way that’s easiest for my loved ones (if there is such a thing), but without burdening them with figuring out what that way is. It’s hard to figure out how to make that happen.

I have a Power of Attorney at my old HMO, but not my current. I haven’t quite figured out how to get that established there yet. But the old form is photocopied and locked away in a safe. Hopefully it’s still valid.

Great conversation. One we should shave and be clear with our families about. Be clear, put it in writing. Incapacitated individuals wishes need to be expresses so that the burden of choosing is not on loved one in a difficult time.

[…] blood sugar yesterday morning at 5:30am. When I mentioned the term “cascading failure” earlier this week, I had no idea that I’d be a perfect example. How the hell did this happen? Let me confess […]